Hope4Peyton

Tuesday morning we went to Cracker Barrel with friends to get in one last relatively sane meal together before the kids all come clamoring home from school for the summer. From the moment we sat down to the moment the food arrived her head was attached to my arm. She just sat there with her face buried in my arm. In fact, when I tried to butter her a biscuit, she sort of glared at me for moving her pillow around. It rather feels like I have grown a second elbow….it's awkward, but I'm getting used to it.

Peyton's reaction to the steroids has been gradually getting worse each day…the appetite (hello, 4 packs of popcorn a day), the mood swings (who knew opening the car door before she got a chance to could ruin a girl's day?) and the nastiness (No, Rachael, you AREN'T cute!). In fact, she took great glee in telling her dad and me that she was ready to go….I think the exact phrase was "Come on, slackers!!" I have been smacked-down by a 3 year old….my life is complete.

Honestly, if I wake up one more night in a pile of pee….especially pee that doesn't belong to me!…(ok, that may have just made me sound really weird)….I may come unglued. I know for a fact that one thing we'll be getting as a part of Peyton's "End of Treatment" celebration is going out and buying a new mattress! It only happens when she's on steroids because it totally dries her out and she drinks like a camel….and I roll over into a puddle…it takes a special kind of love to deal with that. I have to pad the bed now and pray that she doesn't roll off of it in the night to make her nightly deposit.

Monday night we were up at 3:30 AM, she needed to eat and catch some Tivo time….then she smacked me awake at 5 AM to get reassured that we WERE going to go to Cracker Barrel in the AM….and then she had the nerve to fairly hiss at me when I tried to wake her up to go. My sympathy level drops real low when she's had me up all night and I tickled her awake anyway. When we walked the kids to class, lots of kids and parents who are used to a smile from her in the morning are surprised to see her scowl at them or to totally ignore them when they talk to her. She needs a shirt that says "Steroids, dude…catch me in two more weeks if you want nice Peyton".

It was so bad for her yesterday that when I told her it was time to go to her favorite thing, playgroup at the Children's Cancer Center, she started crying and said she didn't want to go. That's like Pete not wanting to go to the Oreo factory or me turning Brad Pitt down for a date.

We only have a week left to go…..a week of her moodiness getting even worse, her cheeks and belly puffing up like an angry blowfish and her eating like a linebacker on…well, steroids! She's so fat and sassy right now, she was standing next to my friend who is 5 months pregnant and there she was…belly thrust out, hand on her back in a tent of a dress…she looked like a little mini-pregnant-me. It was hysterical. Until I laughed at her and then she scowled at me and reminded me that along with the belly of a pregnant woman, she also has the temper of one. I stopped laughing.

Last night was Rachael's k5 graduation….probably one of the cutest things I've ever been witness to. The kids all performed magnificently through math, reading and Bible examples, Rachael got to do some reading on stage…very proud moment. They sang and showed off like the proud soon-to-be first graders they are. The first part of the program was the kids in a circus skit, Rachael was a lion and then they changed into their little caps and gowns and received their diplomas. It's hard to comprehend that my baby is in the first grade already, she's a constant source of laughter and fun and I'm so very proud of how she's changed and grown into this fantastic kid.

This morning, Peyton and I headed off to the clinic. She arrived with her little thundercloud of gloom hanging over her head. She immediately started complaining she was hungry….this is only an hour after polishing off a 4-egg breakfast…I kid you not….so she ended up snacking on some chips and then she laid in my lap as she received her chemo. Her doxirubicin takes an hour to through Iv and Peyton and I dozed off in the infusion room lounger….I think I snored a little bit…and my friend Penny was kind enough to shoot a picture of us on her camera phone that I will not be posting here. We were both exhausted and needed the nap.

We have next week off except for a finger poke and then we start our chemo/radiation/Ronald McDonald trip on the 6th. Looking forward to getting it done and out of the way.

Today was the kid's last day of school AND Rachael's 6th birthday. We're heading over to Grandma's house tonight for a special dinner birthday with cake and ice cream to follow. Again with the amazement of how fast the time goes by, the kids grow and change and become real human beings.

Yard sale fundraiser plans are coming along. We're collecting stuff for the auction portion and we have a donation date set up for June 29th from 9-12 and from 5-7. We're working on getting Peyton-Palooza flyers out there so we'll get a good turnout. So many friends are getting involved and helping out and I know that if we don't raise a single dollar, it'll be a wonderful reminder of how much our friends have given us and love us…they rock! If you're interested in helping us by getting flyers out there, email me at [url=mailto:anissa.mayhew@verizon.net]anissa.mayhew@verizon.net[/url] and I'll shoot you the flyer pdf.

Thanks again for all the wonderful messages about the [url=http://www.youtube.com/watch?v=Kvcvi1IioSY]Cancer Kid movie[/url]. I'm glad it's touched so many hearts and that others are sending it around to help raise awareness of the many different types of cancer affecting our kids and the need for a cure.

DID YOU KNOW??
*In the U.S. almost 3000 children die from cancer each year.?

* Cancer is the number one disease killer of children.?

* In the past 20 years only one new cancer drug has been approved for pediatric use.?

* Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.?

* September is Pediatric Cancer Awareness month, which nationally goes largely unrecognized. ?

*The government recently cut the budget for Childhood Cancer Research.?

*14,000 children will be diagnosed this year with cancer.?

*Currently there is between 30-40,000 children being treated for cancer in the US.?

*As a nation, we spend $ 14 BILLION per year on the space program, but only $ 35 MILLION on childhood cancer research per year.

*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS and yet the U.S. invests approximately $ 595,000 for research per victim of pediatric AIDS and only $ 20,000 for each victim of childhood cancer.

*The NCI federal budget for 2003 was 6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

*In 2003, the Childrens Oncology Group (COG, the world's largest childhood cancer research organization, caring for 90% of children and adolescents with cancer in North America) submitted a grant to the NCI that was approved for million each year for 5 years for childhood cancer research – this is the operating budget for COG. From 2003-2006 only million of the million approved for each year has been provided to COG.

f.r.o.G…fully relying on God
—Anissa

[url=http://www.youtube.com/watch?v=Kvcvi1IioSY]So, here's another movie I put together.[/url]

(Note to those who saw it early, I had to make a last minute change to the ending, so hopefully it's right now. If you linked to it on your website, you'll need to change the URL.)

This one isn't about our family, it's just the most amazing, wonderful, brave kids you've ever seen. It's meant to pull heartstrings and make people notice that pediatric cancer needs us to get active and protect our kids!

So, pass this one on, spam the heck out of your friends and family….make sure everyone gets to see it.

f.r.o.G…fully relying on God
—Anissa

ps….you might notice that the time stamp on this post is 2:38 AM….I'm watching Little Einsteins, with Peyton guzzling milk and popcorn…I LOVE steroids!

Wow….amazing weekend!

I am so glad that we had this weekend, it was good for Peter and myself to have a chance to get out, it was good for the kids to spend some time out of our house and it was great for my hair to say goodbye to the split ends!!

Friday night Peter was going to take Nathaniel and Rachael to a Storm game, but he ended up having to work and so we all stayed home and vegged out. That was probably a good thing because the rest of the weekend was a bit of a blur.

Saturday we shuffled the kids off, Nathaniel went to the beach and spent the night with his best friend Ryan and the girls went with the Grandma Sharon for the night…I know that somewhere there were ice cream cones involved! Peter and I dressed up in pajamas and headed to Channelside to meet the rest of our teammates for the Quest for Hope scavenger hunt. We knew the basics of it, but really had no idea what to expect. The whole thing went to benefit the [url=http://www.childrenscancercenter.org]Children's Cancer Center[/url], but it was more fun that fundraising. I don't even know how many people were involved, but it was pretty competitive. There were three teams of cancer parents, three families to a team. One team went as doctors and nurses, the other went in camo and army get-up, and our team all went in our pajamas….yes, I have pictures, I will be posting them soon.

We had 4 hours to hit 20 different spots between Channelside and Ybor City….at each place we had a list of tasks to accomplish. Such as….at Hooters, someone had to eat "suicide" wings and drink a beer in under 2 minutes….at Stumps Supper club I had to dress up like the hostess and help seat a party and tell them the specials from memory….at Splittsville someone had to bowl backwards…it was a riot! Plus, there was a list of "extras", we got additional points for accomplishing any of the tasks…we had to get a compete stranger to give one our teammates a piggy back ride in the street, we had to find a red headed guy AND a red headed girl to kiss one of our teammates at the same time…on the cheek, it was me….it was gross, but I took one for the team. There was so many other things we had to do, some funny, some hard, some mildly humiliating, but all for a great cause, the CCC!

It was so much fun. We didn't win, we didn't even come CLOSE to winning, but we had a blast! I want you to know that some of the teams wore costumes that didn't stand out too bad….but we got some seriously strange looks running around in our pjs in Ybor at 9 pm….hysterical! At the end of the night we had a great dinner catered by the Columbian restaurant and got to just sit down and laugh about all the stuff we had to do. I truly love these people, the other parents we've had the honor and pleasure of meeting, they are inspirational in the way they can always laugh and find the joy through the struggle.

We got home late….or early….depends on how you want to look at it. Crashed into bed and then I had to get up at 7 to get ready to head down to the CCC for the Mom's Spa Day. It was hosted at the most amazing day spa in Tampa called "The Grand"….EVERYONE should have a chance to go to this place. There were 16 moms that were able to attend, some of us seriously underslept from running around like maniacs at the scavenger hunt….others underslept from just being a mom.

We had all had a chance to choose from a list of treatments: full body massage, grand pedicure, facial or hair cuts. It was fabulous!!!! I chose to get my hair cut, thank you, Ashley. Peyton can no longer accuse me of having "big head", my hair looks wonderful, better than it has in roughly 10 months. I also got the pedicure from Christa, who was darling and able to keep a perfectly straight face when I apologized for the condition of my feet before I'd ever let her touch them. They are sparkly and happy now too.

They brought us champagne and snacks and just pampered the ever living daylights out of us. The moms were sort of glazed over in happiness….it was hilarious to watch us walking out of there, some of us swishing and TWIRLING our new haircuts, some just a boneless pile of mush from the massages….WOW!! I can't thank the CCC enough for this day and for the chance for us Moms to take a few moments away and spend it talking and laughing and reconnecting with the parts of ourselves that like to smell good and look pretty. And if I ever win the lottery, I am definitely going back to have Ashley cut my hair on a regular basis, she's amazing.

When I got in the car to head home, I called Pete and in the background I could just hear Peyton sobbing. I could also hear all kinds of other weird noises….nothing too strange, but out of the ordinary. After I assured Pete that I would be home (though he encouraged me to stay out and enjoy myself….crying steroid rage baby or not….that's MY husband!) and help with whatever meltdown was happening, he put the kids on the phone. Poor Peyton was crying so hard I couldn't even figure out what was wrong with her. Nathaniel and Rachael, however, had no problems in letting me know that Peyton was going off the deep end. But later, Peter told me how proud and amazed he was, because when the kids realized that Peyton was losing it and Dad was having a hard time getting her to calm down…they helped! Nathaniel went into his goofy act, trying to make her laugh and Rachael read her a story and that is the sweetest thing I've ever heard!

Apparently it's a good thing for mom to leave once in a while and let the rest of the crew have a chance to do the dirty work, because they get it done well!

Overall, Peyton's doing very well. The appetite, surprisingly, comes and goes…but her stomach is often upset so she doesn't want to eat, but yet she does….it's a very conflicted time for her. She's not sleeping well….therefore, neither am I….but besides the easy temper, she's not had too too many horrid moments. She's not being completely evil, although she has said some fairly nasty things to her silbings, but nowhere as bad as the last time she did the steroids. We're 12 days into it, only 18 more to go!

Tomorrow is going to be an interesting day. Pete was supposed to take Nathaniel to Busch Gardens but he has to fill in at work for a friend whose wife has gone into pre-term labor, so I'm left with the tricky task of taking Nathaniel and Peyton to Busch Gardens by myself. This was supposed to make up for him not going with his class to Sea World, but I think when it comes down to it, I'm going to have to wrangle a way for him and I to go another day, when it is just him and me. Taking Peyton will really suck most of the fun out of the day because he's a coaster-freak and I won't be able to go with him on any of them. Maybe we'll go to a movie instead…he's easy going like that.

Tuesday night is Rachael's k5 graduation…she has a little cap and gown….it's so sweet I almost get a cavity just looking at it. I can't wait to take her pictures in it!

Wednesday Peyton and I head back to the clinic for more chemo. That's also Rachael's 6th birthday…..wow, where did THAT time go? It's also the kid's last day of school…again…the time….where did it go? I haven't bought Rachael the first birthday gift, so maybe that's what we'll do tomorrow, we'll go shopping for Rachael….that should thrill Nathaniel to no end, maybe afterwards I'll poke him with white hot needles just to add to all the fun.

Thanks for all the great messages for the slideshow. It was wonderful to make and it is such a wonderful thing to look at and see how she's changed and grown and how our family has remained steady through it all. We are so blessed and thankful that we have each other.

f.r.o.G…fully relying on God
—Anissa

When I saw the beautiful slide show that Angela Powell and her friend Ashley put together for [url=http://www.hope4adelaine.org]Adelaine[/url], I really wanted to do something similar. This is the product of that work, and I totally stole the song that she used for Adelaine, but I couldn't find one that spoke so strongly to my heart and was worded so perfectly.

The song is "Praise You In This Storm" by Casting Crowns.

[url=http://www.youtube.com/watch?v=tBxXoKR4g9s]Click here for the video at YouTube.com.[/url]

Visit Adelaine's site to see the beautiful slideshow her family made as well.

f.r.o.G…fully relying on God
—Anissa

**I entered a picture of Peyton and Adelaine into a contest for "The Best Friends picture" on Shutterfly. If you'd like to give their chances a boost and [url=http://photocontest.shutterfly.com/action/photocontest/vote?entry=191322]vote for their picture[/url], they will get sweet little bracelets as prizes.

And now….

Apparently I've messed with my kids' heads one too many times….they're on to me now.

"Mom, the milk goes bad tomorrow."

"That's just the date the store has to sell it by, it's not going to go bad tomorrow."

"Well, the date says tomorrow and I'm not going to drink it."

"It won't be bad, if you smell it tomorrow it will smell the same and taste the same as it does today. That's just the date that the store has to get it gone."

"I'm not drinking it."

"Do you think the milk has some sort of calendar and is going to know that its date has come and just go bad?"

"Maybe."

"You don't trust me on this one?"

"It's written on the milk, Mom!"

I wonder if he realizes that there is a can of baked beans that has been in the pantry since 2004. I may just save it and give it to him as a graduation gift. In fact, I might start saving my milk cartons and transferring the new milk into the old cartons just to watch his reaction to see that the date is 3 months ago!

And I wonder why my kids don't trust me.

Last night the family packed up and headed down to the Children's Cancer Center for support group night. It's sort of like AA for cancer families. "Hello, my name is Anissa and my daughter has cancer. It's been 56 days since my last full night's sleep." I should be getting a blue chip any day now.

It was a big night for the guys. The moms stayed at the center and had our own gab session and the guys took off for a restaurant and had dad's night out. Peyton's steroid induced clinginess meant that I spend the whole night with her attached to my side, she was very good though, she didn't have any sort of breakdown, she just needed to be with me the whole time.

Last night we had one new cancer family, two announcements of relapse and the room was so full of just moms that if the dads had been there it would have been standing room only. That is so depressing. Uggg. But it was still a good night. Lots of the kids are doing well, treatments are rolling along and most cancers are staying steady. Some aren't. But as hard as we all take it when we know a child has no more options and the end of the fight is coming, we are joyful to hear that someone else is coming up to the end of successful treatment, that someone had a good day…or maybe someone just didn't have a BAD day. We definitely take out happiness wherever we can get it.

Peter and I are going to participate in the Quest for Hope Scavenger Hunt. Tomorrow night, people from all over Tampa are going to meet at Channelside and teams of 5-6 are given 18 places throughout Ybor and Channelside that they have to find and then a task to accomplish. We have three teams of parents, three families on each team, from the Children's Cancer Center attending and the competition is fierce! The prize is the Brad Richard's Richey's Rascals suite at the St. Pete Times Forum for a Lightning game next season, and a private meet and greet with the players….oh game on! To my CCC friends who will be going and competing against us…good luck!….and I promise we'll post pictures of OUR night at the suite for all of you to enjoy! The cost to participate is 0 a person, you can still register and come be a part of the night, all proceeds of the night are going to the CCC. We highly encourage you to form a team and join, there will be lots of food and prizes and fun stuff to do throughout the night, ending with what is promised to be a super party at the end of the hunt.

Sunday the CCC is giving the moms a spa day…..how cool is that? The moms are being treated to spa services like massages, pedicures and facials at a local salon, brunch and all sorts of fun bonding time….I CANNOT WAIT! It is going to be a fantastic treat and I know we are so thankful for the chance to have this pampering. I kid you not that no less than 6 people came up to me today when I was dropping off the kids at school this morning to tell me how tired I looked yesterday. It was sweet because each one just made an effort to give me some love and support. And to remind me that haggard is the new IN look for 2007.

f.r.o.G…fully relying on God
—Anissa